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Monday, June 20, 2011

Health Update: Gastro Visit

If you've been reading this blog for a while, you already know that my son reacts badly to anything containing dairy or gluten. After putting him on a gluten free diet in late October 2010, his health did a major turn around and all of his nasty symptoms disappeared. The question became: Could it be celiac? (hence the URL and the blog title). We declined the biopsy for the time being because he had already been gluten free for a few months and putting him back on the diet for the 2-3 months necessary to get an accurate result was hurting his health too much. He was losing weight rapidly, with constant diarrhea and was lethargic and miserable. Our family doctor sent him to be tested for allergies (he was tested for both wheat and dairy), and he tested negative. Since it was clear that he was reacting to gluten, our family doctor felt that the symptoms were close enough that she wrote a diagnosis to the effect that he had enough symptoms to treat for celiac (meaning a strict gluten-free diet).

The specialist at the hospital who we saw my son in December led us through a range of possibilities that included full-blown celiac, but that also ranged from a wheat allergy to a gluten intolerance. At the time of his visit we had not yet seen the pediatric allergist. The hospital did blood work that showed that Etienne was low in iron and vitamin D. He suggested coming back for a follow-up appointment in 6 months. He also suggested re-exposing our son to gluten or wheat to see what happened. While we didn't do this voluntarily, our son has been exposed to gluten 3 times since December, each with the same result: rash (2 of the 3 times), bloating, gas, diarrhea for about 2 weeks post exposure, mood and behaviour changes and increased appetite.

Today was the six month follow up. Thankfully, our son has gained some height and weight since the last visit. The doctor indicated that he was in the healthy range and was pleased to see an improvement. He asked what we were feeding him, and said that his diet seemed to be working and that it was nutritionally sound. We went through the list of how my son had responded to being exposed to gluten, and he agreed that there was clearly a problem. But we're no clearer to receiving consensus on his condition than we were before.

The doctor wonders whether there is a wheat or a gluten allergy at work, rather than full-blown celiac. Despite the fact that my son has already tested negative for a wheat allergy. Just like the celiac test, allergy tests can often be inconclusive or show negative in young children. He suggested keeping him on the gluten free diet because it's working, and having our son allergy tested again when he's three, and then possibly every year after that if the test comes back negative. We also have the option to try and feed him gluten based products again in the future for long enough to get an accurate biopsy done, but since his reaction is so severe, the doctor agreed that it might be better to wait until he's older provided the allergy tests continue to come back negative.

So, what does this change? Nothing.

Whether this turns out to be celiac, gluten intolerance, gluten allergy or a wheat allergy, the treatment remains the same: a strict gluten free diet. The exception comes if it's a specific wheat allergy, in which case gluten from other sources could be introduced into the diet. But since most processed foods with gluten take it from a wheat source, it might be more complicated for my son as a child to discern between the different sources. And if/until that distinction is made, he didn't recommend changing anything in his diet in regards to gluten. The doctor also mentioned that if it is a wheat allergy, it is more likely to get worse rather than better over time, so the question of "will he grow out of it" is No, whether it's celiac or not.

So that's where we stand. Could it be celiac? Gluten intolerance? A wheat allergy? Only time will tell.

5 comments
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This is our story as well. We are assuming it's celiac, but it could be a gluten allergy - they test for wheat allergies not gluten and our allergist said that some kids only react if you tape a piece of the food to their skin for an extended amount of time (odd, I know)

My son was also not gaining weight, etc on a traditional diet but has thrived gluten free. We went dairy free for a while, too, but that made no difference.

We have elected to wait until he's five to test him. 50% of kids with a wheat allergy outgrow it by age five, so we'll put him on wheat at that time to test for sure because otherwise, it may still be inconclusive.